by Melanie Reid
One weekend on the spinal unit the peace was broken by the sound of screeching. My mate Reiver came zooming down the corridor in his chair, glee writ large on his face.
‘Catfight in Room 5 – Crazy Daisy and Fruitloop!’ he told us.
We clustered in our chairs in the corridor to listen, a jam of nosy metal, leaning as far forward in our seats as we were capable in order to hear. Like schoolchildren spectating in the playground. ‘Fight! Fight! Fight!’ Fruitloop was an alcoholic who claimed to some that her man had thrown her off a balcony. She was one of those patients who existed in a haze, permanently stoned on tramadol and methadone, plus the onset of alcohol-related dementia, plus of course any drugs she could persuade her visitors to bring her. Crazy Daisy, her face reddened and broken with years of similar heavy drinking, also existed on a parallel universe of opiates, a heroine in her own ever-evolving soap opera. She told different stories to anyone who’d listen to her, or merely those who couldn’t get away from her, how she’d fallen over a coffee table when she was pissed one night and damaged her neck on the furniture. She had been only partially paralysed the first time; the second time she’d fallen she’d broken her neck and had a tracheotomy to allow her to breathe. She carried oxygen on her electric wheelchair and had tubes strapped to her face. Her stamina for finding an audience, though, was extraordinary. She glared around her, revolving-eyed, paranoid, scanning for prey. Anyone who would listen to her rambling tales of woe.
There had been tension between the two women for a few days. Now Crazy Daisy thought Fruitloop had been rifling in her bedside drawers and called her out. They were in adjacent beds. Both of them, it might be said, could have started a fight in an empty room.
‘You stole my fucking money, you bitch.’
‘Didnae touch your money.’
‘Aye you did. Ah seen you.’
‘Those are my fucking drawers. You have got your own.’
In the tragi-comic slow motion of wheelchair life, Fruitloop turned her back in a huff. Crazy Daisy rammed her electric chair into her back wheels, yelling abuse. Fruitloop reached for her buzzer, trying to escape. Locked together, they tussled impotently, shouting abuse, the darkest of human comedy. That’s what happened when you took too many drugs to try and dull the pain. That’s what happened when there were no miracles.
The hospital staff could never really spell out to us how much harder life would be at home, with the loss of the ability to breathe fully, to pee, poo and have sex – a rather compelling list. We had to find out for ourselves. You discovered that looking after yourself was now a full-time job. Here lay most of the tension between cerebral-you and the rest-of-you, the recalcitrant bit making constant, high-maintenance demands. Your head regarded the body with resentfulness and weariness, like a non-maternal mother who desperately wants to go back to some high-powered post but is stuck at home with a needy, fretful infant. My body was my prison, my dependency. Much as I hated my useless appendage, I had to care for it. Be kind to it. Hence, I found a constant tug between wanting to neglect it and the self-sabotage of doing so. I had to be stern with myself, order myself to commit to that existentialist, time-consuming grind of pill-popping, bag-emptying, pressure-relieving, pain-dodging, sterilising, all the while smiling gratefully at kind people and repeating, ‘I’m fine, thanks.’ There was no time for anything creative. I was always busy waiting for the next industrial chore and life was screamingly dull. I missed being dazzled by arguments, acting fast.
Two hours every morning, in that first year out of hospital, were spent on a shower chair poised over the loo, battling with my entire digestive system, reliant on district nurses. The more I lost confidence in the process, the more desperate I became. Every morning was a detective story. Had I pooed enough to get through the day safely without an accident? Why were my feet and ankles so swollen? What, if indeed anything, was going wrong? I developed an even deeper admiration for vets, who had to diagnose problems in creatures which couldn’t tell them where they hurt. In the absence of normal sensation, there was so much guesswork. If my body became racked with severe spasm and tone, it was telling me that there was a problem somewhere. Spinal units have a checklist – bladder, bowels, skin lesions, bruises, ingrowing toenails, sprains, broken bones. All these could cause this kind of symptom. But which one? It was a process of elimination. Some causes were easier than others. An ingrowing big toenail, rejecting the ever-swollen flesh surrounding it, had become inflamed. Then the other big toe, in sympathy, started rotting, ingrowing, pus-filled. Or that porridge burn on my thigh, napalm from a tipped bowl, and now behind a see-through waterproof dressing, which had gone gangrenous green.
‘Totally healthy. Call me if it goes bright red,’ pronounced Helen, my amazing district nurse, briskly, peering at it. She was my substitute mother: I obeyed her.
It took many months to realise that I had developed a serious underlying problem since leaving hospital, of which the spasming and oedema and the swollen toes were a symptom. I looked six months pregnant and struggled to lean forward in my chair; or lift myself from chair to bed. Everything I tried to do, my body fought me. An X-ray showed my paralysed guts – we each possess around twenty-five to twenty-eight feet of those great gloopy essential coils – were constipated right back up into my small intestines. I was readmitted to the spinal unit and my insides were blasted with laxatives. I began to use drain cleaner at home – Laxido. As Dave said, they’d be hardly likely to call it Laxidon’t, would they? But the spasms and symptoms of discomfort in my limbs did not diminish.
In the war against cerebral-me, rest-of-me was definitely winning. The semantics of battle again. Then my bladder joined in. Peeing, when your bladder is paralysed, is done in different ways. Paraplegics, with hand function, can transfer onto a lavatory and self-catheterise intermittently when their bladders are full. Tetraplegics have neither the hand function nor the mobility to do this and the only long-term solution is an operation to install a suprapubic catheter. Above my pubic bone, a hole was drilled into my bladder and an indwelling catheter was placed in it to drain into a bag. But piercing the bladder, a vital organ, compromised its natural antibacterial coating and there was no resistance to the ever-present bugs, in particular E. coli. A pattern of continual infection was established: I finished a course of antibiotics and a week later was dragged down by another bug. I could tell immediately. The spasms redoubled, and my urine developed the unmistakable E. coli whiff – rich, sweet, like rotting vegetables. It disgusted me. But there was no escape.
Some academics (Corbin and Strauss) interpret chronic illness in terms of three types of work. Illness work – managing the practical consequences of your problem; everyday work – living, eating, washing dishes; and biographical work – the reconstruction of the self. That first category, keeping functional a paralysed bladder and bowels, was all-encompassing for me and I accumulated a level of knowledge that allowed me to challenge doctors and nurses. My local GPs, hugely supportive women, readily held out their palms and said – you know more about this than us. Thus I developed a certain fragile independence and detachment from health professionals. With the spectre of sepsis ever hovering, I endured the monthly catheter change, carefully monitoring the nurses’ hygiene. And always, always, I weighed the consequences of intervening. Did I remind the nurse to change gloves between removing the old catheter and putting in the new, and risk alienating someone I liked and needed, or did I let her use the same pair of gloves and risk another infection? I took strength from emails from spinal-cord-injured people who said they had, over time, learnt to tell exactly what lay behind the symptoms their body was exhibiting. As one tetraplegic woman advised me, professionals could help to a certain point, but we were essentially on our own. ‘It took me a long time to realise that, especially in regard to the day-to-day aspects of living with this condition. There is a clinical versus real-life dissonance: which is all to say, conventional healthcare can keep us alive, but our quality of life is largely up t
o our own initiative.’
Bladders were something which, as a fit person, I had lived in happy ignorance of. It’s a sad fact that urinary infection and incontinence have been the ultimate Cinderella of health. The world of ‘smart’ technology has bypassed this problem scandalously, even though one in three of us will suffer incontinence in our lives and catheter-associated urinary tract infections (CAUTI) place a huge financial burden on the NHS, estimated to cost up to £99 million per year, or £1,968 per episode. The ubiquitous Foley urinary catheter, a crude tube with an inlet hole and a retaining balloon on one end, remains unchanged in its basic design for ninety years – in medical terms, medieval. Hospital admissions caused by urinary-tract infections have trebled over twenty-five years, and patients who are in hospital for other reasons are increasingly doomed to acquire a UTI when they’re there. The implications for the future, in terms of hospital costs and premature death as antibiotics cease to work, are terrifying. Yet nobody – politicians, policymakers, the medical profession itself – will tackle this unsexy, taboo problem. It makes me mad that high-tech implants are already being used to keep eyes, heart valves and joints functioning; we have face transplants, bionic eyes and gene injections, not to mention driverless cars and bendy phones and rockets to Mars; but no one has yet funded the design of a ‘smart’ sphincter to alleviate one of humankind’s most basic miseries.
A continually poisoned paralysed bladder, I was learning, was as frustrating and unfixable as paralysis. Because of repeated infections, I was sent for several cystoscopies, an examination with a camera. The first one I had done privately. I was to cross boundaries into greater self-knowledge.
‘Did you know you have a very wide urethra?’ asked Miss G, the Greek urologist, when she came to speak to me afterwards. She sounded genuinely enthusiastic.
I shook my head.
‘It’s about the diameter of a pencil. Very unusual.’ She really seemed to be expecting an answer.
What did she expect me to say? Oh yes, I come from a long line of very wide urethras? A stretched urethra wasn’t like having a big penis; it wasn’t a physical attribute anyone would be pleased about, demonstrating as it did that yet again my body no longer belonged to me. This was part of an intricate body awareness I could frankly do without. Within months I was back in again for another cystoscopy, NHS this time, which almost descended into farce. It was conveyor-belt stuff, like inseminating cows: a long line of people of all shapes and sizes sitting waiting to be taken through to be tubed. There was the protocol of form-filling.
‘Do you have discomfort when you urinate?’
‘No, because my bladder is paralysed.’
‘Oh.’ The pen hovered, unable to tick the box.
Then the pre-procedure sample – and the inevitable result.
‘Sorry. You’ve got an infection; we can’t do the procedure.’
A rare red mist came over me at that point: I raised myself up on my elbows with as much speed and dignity as I could muster, eyes blazing, and hissed: ‘That’s precisely why I’m here! That’s the whole point! I’m not leaving without one!’
The specialist who did the cystoscopy was very pleasant – ‘Your bladder looks fine,’ she said. ‘Nothing nasty there’ – but the staff gave me not a single answer to my questions that I hadn’t heard before. Drink more bloody water. Take cranberry juice. La-la-la-la-la-la. I was a frontierswoman, inhabiting territory where there really were no solutions and no experts.
Still the debilitating spasms and stiffness persisted. I felt like screaming at the walls: Please, somebody, just let me know what’s wrong with me. Find a solution.
Some months after leaving hospital, I was called back for a signing-off appointment with my neck surgeon. This presented an opportunity for me to try and reconcile the two parts of me. I vowed that I would be brave enough to look at my neck X-ray, the point where the two parts had come apart. The fulcrum. The breaking point. Undeniable physical proof of the catastrophe. The unseen image had haunted me for a long time and I had vowed not to face it until I could walk, aware I was not emotionally resilient enough. Jennifer Brown, who had performed the operation to plate my neck, pulled up the before and after X-rays on screen. The before was surprisingly benign-looking, just a slightly exaggerated bend and a widening at the C6 cervical vertebrae at the front of my neck; one bone chip floating away.
‘It doesn’t look too bad,’ I said.
‘Though I suspect we didn’t see the neck at its worst.’
She said it gently. She meant it bent much further on impact but came back. The fresh X-ray, taken more than a year after injury, she was very pleased with: it showed the small metal plate she inserted had stabilised the joint and there was new bone growth. The image made me feel buoyed and optimistic; it was the opposite of upsetting. Appraising me, she asked if I wanted to see the original MRI scan.
‘Yes.’
Immediately I knew it was a mistake. Here was darkness. This image was horrid, showing massive collateral inflammation around the cord reaching right up the neck. At the focus of injury, within the boundaries of the spinal column, there was a black, egg-shaped void reaching from one side to the other: a hole of nothingness. My foundations rocked a little. The surgeon leant forward and pointed at the screen.
My MRI scan.
‘Looking at this, with the swelling up at C4 and C5, the outcome could have been so much worse,’ she said coolly.
In other words, I was lucky to have kept the use of my arms and hands and lungs, even if they were impaired. I thanked her and wheeled out of her room, trying to chew on that piece of good fortune. This was my body and I had to try and find a way to love it. Being Pollyanna was a tough gig sometimes.
Down the side of that black void in my spinal cord, as seen on the MRI scan, some connections persisted, or were restoring themselves. Neuroplasticity was at work. About eighteen months after my accident, I noticed the intercostal muscles in my chest had recovered enough to let me blow my nose properly again. Now it was time to resume work to encourage the same thing in other parts of my body.
After I left hospital I went from four hours a day of in-patient physiotherapy, or twenty hours a week, to one hour a week with a community neurophysiotherpist called Emma, who came to my home. It was as if someone had pulled the communication cord on an express train and my body seemed to screech to a halt. Committed and skilled as Emma was, in the time she had with me, she could do nothing to combat the trauma I experienced from the abrupt reduction in exercise. It was like reaching the end of the bungee cord – my achingly slow rehabilitation didn’t just stall, it regressed. Without the constant help to exercise – I couldn’t do it by myself – my body seized up. A private neurophysiotherapist, Kenny, was very good too, but he cost me £60 an hour, plus travelling time, for a home visit, and after a while I was simply unable to sustain the expense. My hospital hand therapist, who had devoted an hour a day to straightening and exercising my damaged fingers, did not have an equivalent in the community. Anger and hopelessness gnawed at me. Unwittingly, I was experiencing yet another of the hidden scandals of modern-day healthcare – the lack of NHS physiotherapy and rehabilitation for neurological conditions and other chronic illness. The sufferers of strokes, brain damage, heart disease, diabetes, obesity, broken bones and other neurological illness collectively number millions, but as soon as they leave hospital they fall into the abyss. The NHS has almost totally given up on a sufficient out-patient physiotherapy, because nobody ever died from being stiff and weak, and misery is not yet a cause of death on any certificate. But physical rehabilitation, done properly, is the key to recovery, quality of life and greatly reduced demand on other NHS services. It is fundamental to a healthier population. The process of recovering faculties, strength and movement, which goes on for years, is halted overnight by the withdrawal of exercise and physiotherapy. I simmered with anger at the lack of preventative work in public health.
Clearly, if I wanted to rejoin the two parts of
my body, the rehabilitation journey was my responsibility. Archie the joiner built a hut for me inside the barn, with a small set of parallel bars in it, and when I felt able to impose on two friends at a time to help me, I used it. But it wasn’t often enough. At one of my weekly sessions with Emma, when I was weaker than usual, my knees suddenly buckled on the parallel bars and I slid in slow motion to the ground, with her, half my height, unable to hold me. As we rolled on the dusty floor, I burst into sobs of utter despair. At which point, she fixed me with a fearless eye – she was a former rugby player – and surprised me with a question.
‘Would you consider anti-depressants?’
‘Superwomen don’t need them,’ I sobbed.
‘Superwomen do,’ she said gently. ‘Sometimes superwomen need them the most.’
And so for once in my life I took some good advice. With hindsight, I realise I had been suffering from smiley depression since my accident. I had fallen into the habit of bursting into tears every time I got into my wheelchair in the morning, after my council carers had left me, at the thought of facing the day. Then I pushed myself up to the kitchen and started crying again as soon as I saw Dave. He found this dreadfully hard to cope with. He didn’t do tearful women. Having the sense to accept that I needed some outside help to cope was one of the better things I did in that early period post-hospital. With fluoxetine I still felt like me, but a more mentally resilient and much less tearful me. The peaks and troughs had been subtly smoothed out. Most important of all, I didn’t well up with misery every time I saw someone I loved.